Health-Related Quality of Life in FKRP-Related Limb-Girdle Muscular Dystrophy R9.

ABSTRACT:

Background

Limb-girdle muscular dystrophy R9 (LGMDR9) is a chronic progressive hereditary muscle disease, related to the Fukutin Related Protein (FKRP) gene, that may cause major disabilities, cardiomyopathy, and ventilatory failure. Knowledge of how LGMDR9 affects health-related quality of life (HRQoL) is relevant in treatment and care.

Objective

To investigate HRQoL in the Norwegian LGMDR9 population over 14 months and relation to fatigue and sleep quality.

Methods

Participants (16+ years) of the Norwegian LGMDR9 cohort study completed two HRQoL measures, i.e., Individualized Neuromuscular Quality of Life questionnaire (INQoL) and the 36-item Short Form (SF-36) at baseline, 8, and 14 months and measures of fatigue and sleep quality at 9 months.

Results

HRQoL

SUBMITTER: Jensen SM 

PROVIDER: S-EPMC10789334 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature